Appeal to help Emneth baby born with rare condition
An appeal has been launched to raise £10,000 to buy a special bath to help a brave baby with a rare skin condition.
Reggie Brinton suffers from the congenital condition Ichthyosis, which creates itchy and painful skin that sheds every 12 hours.
Mum Leia has to keep Reggie moisturised every two to three hours – so the pair are lucky to get more than a few hours sleep each night.
But despite his condition six-month-old Reggie remains a happy baby with a ready and stunning smile.
Now Miss Brinton is hoping to raise awareness of the condition, which creates thick, dry “fish scale” skin.
Reggie has to have trips to Great Ormond Street Hospital in London for regular treatment and assessment.
Miss Brinton, 26, of Emneth, said: “He is the happiest baby I have ever met. He only cries when he is hungry or uncomfortable. He is always smiling.
“There is no cure for his condition and he is going to suffer from it for the rest of his life.
“If his skin gets too dry, it becomes cracked and prone to infection. I have to use a cream from America.
“I would really like to raise awareness of Ichthyosis. The doctors at Lynn had never seen it before.”
She has already raised more than £2,000 to go towards the costs of a specialist bath which will help Reggie shed his skin and sleep. The Microsilk bath, which is only available in America, would make a huge difference to Reggie’s life by giving him smooth and comfortable skin for days.
But Miss Brinton has been warned that the costs of fitting the bath and transport could reach £6,000.
He was born at the Queen Elizabeth Hospital on September 13 last year and Miss Brinton, 26, of Lady’s Drove, said: “He looked like a burns victim as his skin was tight.”
Reggie, who had fast heart beat, had to be placed in a humidified incubator after his skin began to crack in an ordinary incubator.
The youngster was also born in a membrane, which he began to shed, but was left with cones of skin on his fingers and toes. Miss Brinton said: “He was in intensive care for three weeks.”
Dermatologists at Lynn and London treat Reggie and believe he may have the lamellar form of the condition, which affects one-in-100,000 babies and is characterised by scales on the scalp and trunk.
The youngster also gets only a few hours’ sleep at night due to his condition.
Miss Brinton, who also has a six-year-old daughter Tia, said: “I am lucky that although he has a rare condition he will live a normal life.
“You count yourself blessed when you see some of the children in Great Ormond Street.
“I am trying to work out his cycle when he has a bad skin shed.”
Miss Brinton has joined parent support groups, where she learned about the specialist Microsilk baths, which help to reduce the skin build-up and irritation to aid sleep.
Miss Brinton said: “The great thing is that this bath will take those scales off in one session and he will have nice smooth skin for a few days, which will be an amazing step forward for Reggie in making his life that little bit more comfortable.”
To support Reggie go to: www.gofundme.com/reggiesmsbath